(What follows started as a journal entry last night when I was really feeling the burden of my electrosensitivity pain. It turned into a blog because I want to show other people living with chronic pain that I struggle with this chronic pain life as much as anyone else, but I also step through that struggle daily and keep moving forward with my life. It can be tough, but it’s worth it to have my great life)
This pain is doing me in. It’s doing my head in in more ways than one. I don’t think of it often, but it’s hard not to assume that pain equals harm and I wonder what the electro-magnetic radiation is doing to my brain when it causes this much pain. It’s a sobering thought.
When I started living my life fully again, using the computer, watching TV and talking on the phone despite the pain it caused me, it all seemed worth it. It seemed like a powerful choice. I had reclaimed my life.
But now, 7 years down the track, on nights like this when the headache is more like someone using a blowtorch in my head, I wonder if I should stop. Really, it’s the first time those words have come to me (“Should I stop?”) because stopping living my life has not been a consideration in the last 7 years. Because that’s exactly what it would be – stopping living my life as I know it and as I love it.
Completely avoiding the pain would entail never talking on the phone, never using the computer, never watching the TV, never visiting other people who are using all those things, never texting anyone, never using the air conditioner or heater, never driving in the car. It might be pain-free, but that’s not a life. All the things that drive me and bring me joy in life rely on me being able to use electro-magnetic devices. I know being a mother doesn’t technically require that, but being a fulfilled, happy mother does.
I sometimes wonder what I’d do if I was told I have a brain tumor or the EMR was doing obvious damage to my brain. Would I change anything? Most of me thinks I wouldn’t change a thing because to be happy I need quality of life, but maybe facing real evidence would scare me. And maybe that’s why I’m in no hurry to go for another CAT scan. I didn’t even go back to get the results of my last one in 2007. I just never got around to it and I gathered the specialist surely had some duty of care to let me know if I had a tumor or any obvious damage. Maybe I was wrong there too. I don’t know. I really think I just don’t want to know.
Stopping interacting with EMR would mean cutting off communication with most of the people I love. It would mean stopping working on my blog and all other forms of online business (and most aspects of off-line – especially phone consultations). It would mean no longer volunteering at my daughter’s school for the PFA or school council. No more emails, no more facebook (no huge loss, but if it was gone maybe I’d think it was), no TV shows making me laugh, no chats with friends and family on the phone and no weekend stays at my sisters’ or parents’ houses. And the PhD I planned to start this year would be out the window too (to go along with the one I gave up 10 years ago due to my health).
So, Should I stop? Probably. Will I stop? No. Using electro-magnetic devices causes me incredible pain, but it also provides me incredible fulfillment, joy and the opportunity to make the difference I want to make in this world. Maybe I’ll be on this earth a shorter time and with a lot of pain, but I’ll still be living my life and not shrinking from it.
Quality of life is so much more important to me than quantity of life, and, as it turns out, having raging migraine-like headaches is the consequence I pay for that quality of life. This life sure is a funny thing! If someone had told me 20 years ago that at 40 I’d consider I had a great life even though I lived with constant pain, I’d have thought they were joking. It may not have gone exactly as I thought it should, but I certainly do have a great life.
(I still hold out hope that the treatment for my pyroluria will help my body build its defence system up again so it can protect me from electro-magnetic fields. There’s no signs of improvement in that department yet, but after 40 years without the right levels of zinc, B6 & B3 in my body, it could take a while for this machine to start working at its optimal level. As always, I live in hope :-))